Join us this World Duchenne Awareness Day
This year the theme for World Duchenne Awareness Day is “Family: The Heart Of Care”. This theme recognises that a Duchenne journey is shaped by the amazing people who travel the journey alongside someone living with Duchenne. The love, support and daily involvement of parents, siblings, grandparents, uncles, aunts and the community around them is vital to shaping quality of life.
We would love to hear from YOU. We’d love to know about the people who shape the heart of care for your family and the amazing community who enable you or someone you care for who lives with Duchenne to live the best life you can.
Is it the bus or taxi drivers who take you to school who make you laugh every day? Is it the TA who helps you to reach your potential? Is it your Cubs leader or swimming teacher who knew you could achieve something? Is it the physio who really went above and beyond? Do you have wonderful friends or siblings who make sure you’re included? Or grandparents who give you love and support?
As a parent or carer, have you met people who really understand and support you? Have you been to a support group or event that has made a difference?
Who is in YOUR heart of care?
It doesn’t need to be someone related to you. This theme celebrates the people who chose to travel this journey alongside you and the difference they make, knowing that Duchenne brings challenges that need to be shared.
What can YOU do?
We’d love to hear from you. If you are living with Duchenne yourself or caring for someone who does, we’d like you to record a very short video for us. The video will say who is in YOUR heart of care, and how they’ve helped you. We’ll then put the videos together to release on World Duchenne Awareness Day.
Video Guide:
- Record on your phone and send it to us – it doesn’t need to look professional!
- Aim for 30-60 seconds – it doesn’t need to be long!
- Answer a few simple questions:
1. Explain who you are and a little about yourself (EG I am (name) and I’m (age) living with Duchenne/I’m a parent/carer/friend of someone living with Duchenne.
2. My “Heart of Care” is (name) because they do/did/helped me achieve/supported me/were there for my family etc.
3. Finish by saying “join Action Duchenne on 7th September 2025 for World Duchenne Awareness Day.
Send the video as an MP4 file by email (lizzie@actionduchenne.org) or by WhatsApp to 07541906221.
We can’t wait to hear from you!
(Please be aware that by sending your video to us, you are giving permission for your video to be used on our Social Media platforms and on our website.)
